Good morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
Good morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
Lori, The spleen issue was discovered during every test known to man (hepatitis, encephalitis & meningitis) since he was delirious and semi conscious when he was admitted. After a week in hospital I think the infectious disease lab has narrowed it down to a tick bite infection (not Lyme). He has been on IV doxycycline until he was released yesterday! I’m not sure what is happening going forward, but the infectious disease physician said he may order additional medication. BTW, I’m 1,100 miles from him & Facetime was great during his release yesterday! ❤️
Lori, this is actually happing to my son who has CLL, also. The doctor watching hemoglobin getting lower and almost sent him to the OR for removal of the spleen until his son, an endocrinology surgeon, halted it! It is currently being watched. I suppose I passed the CLL to him 😩!
Good morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
Hi @johnwhitley, I want to officially welcome you to Connect. It looks like you’ve been a member for a couple of years already but this is your first time posting!
This was such an uplifting reply showing how your positivity and take charge attitude has shaped your future! This comment…wow! “ The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.”
Your words will offer encouragement to so many others who have CLL and need a morale boost! Will you consider being a regular visitor to the forum? ☺️
Thankyou for your kind word's. I do visit the site daily just to see if
there are any posts regarding CLL. I'll try to be a bit more interactive
with the group xxx
Hi @nana120. An enlarged spleen is a pretty common side effect of CLL. Instead of typing it all out, I found a really good article for you that explains why enlargement happens with conditions like CLL or other blood cancers.
Leukemia Enlarged Spleen: What To Know https://www.patientpower.info/leukemia/enlarged-spleen-leukemia
What does your doctor say about the tear in your spleen leaking blood? Wouldn’t that be considered a ruptured spleen? How was it determined that your spleen has a tear?
Lori, this is actually happing to my son who has CLL, also. The doctor watching hemoglobin getting lower and almost sent him to the OR for removal of the spleen until his son, an endocrinology surgeon, halted it! It is currently being watched. I suppose I passed the CLL to him 😩!
I was diagnosed with CLL in 2019 just before covid hit. I had swollen lymph nodes along my collar bone which I thought were just swollen glands. I'd had them quite a while before one seemed to grow a little which made me think I should really have them checked.
After a biopsy, to my great distress it came back as CLL. I was just told not to worry and carry on as normal. This was fine for a while until the worry really got on top of me and I ended up having treatment for my mental health.
I finally pulled my head back together and got a handle on the situation. I'm now 51 and refuse to let this get the better of me again. I see a haematologist every six month's for a full blood check up, but as of yet I receive no treatment or medication, and apart from the same swollen lymph nodes and a lowish white blood cell count, I'm absolutely fine and carry on with life as normal, although now if there's something I want to do I just do it. The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.
It is definitely scary being told you have Leukaemia, but thankfully CLL is one that can be lived with until old age takes it's toll.
I'm really hoping I can hang around to see my two teenage daughter's have families of their own and I get to enjoy it with them.
I found CLL scary as hell, but I don't have the luxury of curling up into a ball and letting it defeat me. As hard as it can be we just need to keep putting one foot in front of the other and enjoy every minute we're given.
Hi @johnwhitley, I want to officially welcome you to Connect. It looks like you’ve been a member for a couple of years already but this is your first time posting!
This was such an uplifting reply showing how your positivity and take charge attitude has shaped your future! This comment…wow! “ The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.”
Your words will offer encouragement to so many others who have CLL and need a morale boost! Will you consider being a regular visitor to the forum? ☺️
I was diagnosed with CLL in 2019 just before covid hit. I had swollen lymph nodes along my collar bone which I thought were just swollen glands. I'd had them quite a while before one seemed to grow a little which made me think I should really have them checked.
After a biopsy, to my great distress it came back as CLL. I was just told not to worry and carry on as normal. This was fine for a while until the worry really got on top of me and I ended up having treatment for my mental health.
I finally pulled my head back together and got a handle on the situation. I'm now 51 and refuse to let this get the better of me again. I see a haematologist every six month's for a full blood check up, but as of yet I receive no treatment or medication, and apart from the same swollen lymph nodes and a lowish white blood cell count, I'm absolutely fine and carry on with life as normal, although now if there's something I want to do I just do it. The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.
It is definitely scary being told you have Leukaemia, but thankfully CLL is one that can be lived with until old age takes it's toll.
I'm really hoping I can hang around to see my two teenage daughter's have families of their own and I get to enjoy it with them.
I found CLL scary as hell, but I don't have the luxury of curling up into a ball and letting it defeat me. As hard as it can be we just need to keep putting one foot in front of the other and enjoy every minute we're given.
Hi @nana120. An enlarged spleen is a pretty common side effect of CLL. Instead of typing it all out, I found a really good article for you that explains why enlargement happens with conditions like CLL or other blood cancers.
Leukemia Enlarged Spleen: What To Know https://www.patientpower.info/leukemia/enlarged-spleen-leukemia
What does your doctor say about the tear in your spleen leaking blood? Wouldn’t that be considered a ruptured spleen? How was it determined that your spleen has a tear?
I was diagnosed about a month ago. I was reviewing the blood tests from a hospitalization for pancreatitis and the smear test caught my eye in all the daily numerous blood tests done when I was in the hospital. Nobody mentioned it! So I had a follow up Dr appointment and asked (I looked it up beforehand so I knew what it was) but I was told that it was possible for that to be an issue because of the recent pancreatitis so we waited a month did the test again and sure enough it’s CLL. My doctor said to me, you will die with this not because of this. I’ve had two appointments with a hematologist oncologist, not on any treatment yet my next appointment is in August. My white blood cell counts elevated between the two weeks the last time I had blood tests. I’m a little lost in all of this still processing and trying to understand what are the next steps.
Welcome to Connect, @thacket3. If you’ve read through the posts in this discussion, you’ll see that you’re not alone with a CLL diagnosis out of the blue. Many blood cancers or conditions tend to develop slowly over time. So unless someone is experiencing symptoms the disease isn’t discovered until a routine blood test shows there’s a change.
As for next steps, your hematologist oncologist will monitor you closely for a while to look for trends in blood work. If things are stable then there’s not much that will change for you. CLL is one of the more treatable forms of leukemia and quite often requires just active surveillance. Over time, if there are indications that the disease may be progressing then your doctor will discuss treatment options. But for some people that can take years or maybe they never need treatment.
Besides this conversation where you joined the group, there are other discussions with CLL members. You might want to read through the comments in this discussion:
Anyone have chronic lymphocytic leukemia (CLL)? https://connect.mayoclinic.org/discussion/anyone-have-cll/
You also mentioned having pancreatitis. If you’re interested in talking with others with that shared experience, here is a list of search results of pancreatitis discussions: https://connect.mayoclinic.org/search/?search=Pancreatitis+
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To my knowledge CLL is not inherited
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2 ReactionsLori, The spleen issue was discovered during every test known to man (hepatitis, encephalitis & meningitis) since he was delirious and semi conscious when he was admitted. After a week in hospital I think the infectious disease lab has narrowed it down to a tick bite infection (not Lyme). He has been on IV doxycycline until he was released yesterday! I’m not sure what is happening going forward, but the infectious disease physician said he may order additional medication. BTW, I’m 1,100 miles from him & Facetime was great during his release yesterday! ❤️
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4 ReactionsGood morning, @nana120. As a blood cancer patient myself and as a mother, I worry about the same thing you are…that we could pass this along to our children. I had AML, which I learned is not a directly inherited blood cancer, nor is CLL. While some genetic mutations can be identified or associated with blood cancers they’re not directly inherited in a straightforward manner. Most cases are random…with genetic mutations that we acquire with age. Le sigh…
Since your son’s splenectomy was halted, is he on any medication to reduce the swelling of his spleen?
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Helpful -
Hug
1 ReactionThankyou for your kind word's. I do visit the site daily just to see if
there are any posts regarding CLL. I'll try to be a bit more interactive
with the group xxx
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Like -
Helpful -
Hug
1 ReactionLori, this is actually happing to my son who has CLL, also. The doctor watching hemoglobin getting lower and almost sent him to the OR for removal of the spleen until his son, an endocrinology surgeon, halted it! It is currently being watched. I suppose I passed the CLL to him 😩!
Hi @johnwhitley, I want to officially welcome you to Connect. It looks like you’ve been a member for a couple of years already but this is your first time posting!
This was such an uplifting reply showing how your positivity and take charge attitude has shaped your future! This comment…wow! “ The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.”
Your words will offer encouragement to so many others who have CLL and need a morale boost! Will you consider being a regular visitor to the forum? ☺️
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Helpful -
Hug
2 ReactionsI was diagnosed with CLL in 2019 just before covid hit. I had swollen lymph nodes along my collar bone which I thought were just swollen glands. I'd had them quite a while before one seemed to grow a little which made me think I should really have them checked.
After a biopsy, to my great distress it came back as CLL. I was just told not to worry and carry on as normal. This was fine for a while until the worry really got on top of me and I ended up having treatment for my mental health.
I finally pulled my head back together and got a handle on the situation. I'm now 51 and refuse to let this get the better of me again. I see a haematologist every six month's for a full blood check up, but as of yet I receive no treatment or medication, and apart from the same swollen lymph nodes and a lowish white blood cell count, I'm absolutely fine and carry on with life as normal, although now if there's something I want to do I just do it. The CLL has actually given me a new lease on life and my mental health has never been better or my head clearer.
It is definitely scary being told you have Leukaemia, but thankfully CLL is one that can be lived with until old age takes it's toll.
I'm really hoping I can hang around to see my two teenage daughter's have families of their own and I get to enjoy it with them.
I found CLL scary as hell, but I don't have the luxury of curling up into a ball and letting it defeat me. As hard as it can be we just need to keep putting one foot in front of the other and enjoy every minute we're given.
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Like -
Helpful -
Hug
5 ReactionsHi @nana120. An enlarged spleen is a pretty common side effect of CLL. Instead of typing it all out, I found a really good article for you that explains why enlargement happens with conditions like CLL or other blood cancers.
Leukemia Enlarged Spleen: What To Know
https://www.patientpower.info/leukemia/enlarged-spleen-leukemia
What does your doctor say about the tear in your spleen leaking blood? Wouldn’t that be considered a ruptured spleen? How was it determined that your spleen has a tear?
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Helpful -
Hug
2 ReactionsWelcome to Connect, @thacket3. If you’ve read through the posts in this discussion, you’ll see that you’re not alone with a CLL diagnosis out of the blue. Many blood cancers or conditions tend to develop slowly over time. So unless someone is experiencing symptoms the disease isn’t discovered until a routine blood test shows there’s a change.
As for next steps, your hematologist oncologist will monitor you closely for a while to look for trends in blood work. If things are stable then there’s not much that will change for you. CLL is one of the more treatable forms of leukemia and quite often requires just active surveillance. Over time, if there are indications that the disease may be progressing then your doctor will discuss treatment options. But for some people that can take years or maybe they never need treatment.
Besides this conversation where you joined the group, there are other discussions with CLL members. You might want to read through the comments in this discussion:
Anyone have chronic lymphocytic leukemia (CLL)?
https://connect.mayoclinic.org/discussion/anyone-have-cll/
You also mentioned having pancreatitis. If you’re interested in talking with others with that shared experience, here is a list of search results of pancreatitis discussions: https://connect.mayoclinic.org/search/?search=Pancreatitis+
Has your pancreatitis been resolved?
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2 ReactionsHas anyone been told their spleen is enlarged with a tear leaking blood due to CLL?
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